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2012: A Year of Remarkable Personal Migraine Progress

Exactly one year ago tomorrow, I had a massive breakdown. Sobbing, I proclaimed that I wanted out of this life. I didn’t want to fight anymore; I didn’t want to live with chronic migraine any longer. I even wished for cancer so that I could choose to not treat it, thus dying without technically committing suicide.

Today, my head pain is at a level 4, which is the highest the pain has gotten in a week. In the past four months, the pain usually topped out at a 5, occasionally a 6. Still far from comfortable, that’s way better than daily pain that hits a level 7 or 8, where I was last January. I don’t know how these pain ratings appear to anyone outside my body, but to me, pain reduction of even a single number is cause for celebration.

In the 11 years that chronic migraine has been the focus of my life, last year was the first in which I made significant progress in reducing the severity of attacks. I tried more than three dozen medications in that time and countless other Western and alternative treatments and diets, none of which had any effect. To see any progress is amazing to me; to now be at a place where I expect even more improvement than I currently have experienced is astonishing.

Though you’ve read about my progress through the year, here’s a summary of what’s working for me:

Magnesium: Although I had been on magnesium before with no success, I noticed an improvement  increasing the dose to 700 mg. After trying IV infusions to see if they would be more effective (they weren’t), I ultimately pushed my daily oral dose to 1,000 mg.

Cyproheptadine: The starting dose of 4 mg was enough for me to feel a bit better. Each 4 mg increase brought additional relief until I hit 16 mg, which didn’t seem to be any better than 12 mg. I’m back at 12 mg, though will probably try increasing it again, to be sure that I wasn’t just having a bad week the first time I tried 16 mg.

Diet: It has been a year since I started an extreme version of a traditional migraine elimination diet. Until a month ago, the diet was horribly frustrating. It seemed like both nothing and everything I ate were triggers. I wondered if there were other aspects of foods that I was unaware of that could be triggers. Then a reader mentioned that she feels better when she avoids foods with histamine. This started major research and an even more drastic diet to cut out amines and salicylate.

The initial improvement started to look like a fluke as the migraine attack severity returned to previous levels. A week ago, I switched from ground dark turkey meat to skinless chicken breast as my main protein source and the migraine severity dropped to a level 4. I’m still tweaking the diet and waiting to see a nutritionist. It will be a long process as I test out foods I’ve been avoiding, but I really think histamine and salicylate content in foods and body/beauty products is a major component of my debilitating migraine attacks.

I have so much more to tell you! There’s a detailed post about the diet coming later this week. First I needed to write this overview to remind myself of the massive improvements that 2012 brought. Sure, I still feel worn out and discouraged at times, but every little bit of progress shows me that chronic migraine is necessarily not a life sentence. A year ago, I was convinced I’d never escape that prison.

I was basically the prototype of chronic intractable migraine. (In a bizarre sort of way, that sounds like bragging.) Ten years with no improvement. Countless doctors, naturopaths and all manner of traditional and alternative health care providers have given up on me. I had given up on me. If I can see improvement, so can you. The struggle may be long and arduous, but there is always, always hope. Hang in there.

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The Exhilaration of Irrational Hope: Trying a New Treatment

In a few hours, I’m getting my first occipital nerve block. Sunday I was elated by the possibility for relief, thinking about how, if effective, the treatment would change my life. Yesterday my thoughts changed from “would” to “could” and I became skeptical that it will help. Today I’m just hoping that it doesn’t trigger a migraine attack. This wide range of emotions, from an almost manic excitement to a dread of disappointment, is familiar territory — this is what I feel every time I attempt a new treatment. No wonder trying new treatments is so exhausting.

Mindfulness would eliminate (or at least drastically reduce) this emotional torment, if I could put it into consistent practice. Despite all the wonderful coping skills mindfulness has given me, I resist applying it in this situation. The exhilaration of irrational hope briefly alleviates the difficulties of life with chronic migraine. It counters the pain, nausea, dizziness and distressingly heightened senses of a migraine attack. It provides a glimpse of a glorious (fictional) future that I don’t consciously allow myself to think about, but such indulgence is OK in the context of exploring the outcomes of a possible treatment. Though brief, the high is wonderful.

Like all drugs, irrational hope has a horrible letdown that lasts much longer than the high ever could. Yet, I haven’t been able to break the habit, nor am I sure I want to even though it goes against my general philosophy for how to cope with chronic illness. Any attempt at a new treatment, whatever the outcome comes with a new understanding. For me, that is often the knowledge that yet another treatment has had no positive effect. Even if the treatment works — and I’m speaking from limited experience as I’ve only had two treatments be even slightly successful — there is a period of adjusting to the amount to which it works and the impact it has on one’s life. If I’m going to have to learn to cope anyway, acknowledging that my fantasy of a miracle cure hasn’t materialized isn’t much bother.

As I was procrastinating while writing this post, I saw on Facebook that How to Be Sick author Toni Bernhard shared this apt quote from Brother David Steindl-Rast: “People who have faith in life are like swimmers who entrust themselves to a rushing river. They neither abandon themselves to its current nor try to resist it. Rather, they adjust their every movement to the watercourse, use it with purpose and skill, and enjoy the adventure.” I love the idea of embracing such faith in life as I embark on new treatments. Right now, though, I’m too addicted to the high of irrational hope to entrust myself to the river.

I wasn’t able to edit this piece in time to get it posted before the nerve block this afternoon, which means I can fill you in on how it went. The injections were horrifically painful and I nearly fainted (apparently, this happens to about 10% of people). Good news: the block reduced level 6 pain and to a 3 within 10 minutes. Bad news: it was back to a level 5 within two hours and I’ve spent the rest of the day in level 5 or 6 pain. I’m hopeful that the injections just irritated the nerves and I’ll be better in a day or two.

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Defining “Better” & Improving Even More (I Think) After a Magnesium Infusion

I’ve been “better” since going up to 700 mgs of magnesium on February 7, but I, like always, am struggling to explain what that means. I met with my headache specialist yesterday and had to encapsulate my improvement in a short, concise statement. I said that the severity and duration of the migraines has lessened, but I haven’t noticed much difference in my quality of life. That I definitely feel better, but that hasn’t translated to increased productivity. (Not productivity as in producing widgets in a factory, but in getting my butt off the couch and getting basic things done.)

I know I am better because I can usually shower without having to rest afterward. When I do have to take time to recuperate, like Wednesday night, it seems that 10 minutes of rest is sufficient for me to then put on lotion (a huge chore when I feel bad) and get dressed. It has been more than a month since I’ve had to drag myself straight to bed post-shower. This is a major quality-of-life improvement for me, though not one that really leads to increased productivity.

The numbers from my headache diary show major improvement. The headache specialist looked the diary over and also remarked on the improvement. I have only hit a level 8 once since increasing the magnesium and it was for 10 very long hours. In an average week, I reach level 7 three times and it stays that high for about three hours. Compared to level 8 at least once a week and level 7 six hours a day, five days a week, the improvement does qualify as “major.” Unfortunately, when the baseline is “feeling-like-hell-and-can-barely-get-off-the-couch,” even major advances don’t take me very far.

Though the pain levels have improved, I’ve been struggling with significant nausea, fatigue and lethargy. The nausea may be the magnesium or it may be coincidence. The fatigue and lethargy may be migraine or the effects of Amerge, a triptan that I’ve started taking a lot more now that I’ve identified an occasional visual aura. Sorting out symptoms of the disease from side effects of the medications used to treat the illness is so complicated!

I took all this information to my headache specialist and his first reaction was, “Let’s give you an infusion of 1,000 mg of magnesium and see if that’s really what’s helping you.” I was thrilled and a little afraid: What if the magnesium, which I’ve regarded as magical, isn’t actually helping and my improvement is an unexplained fluke? On the other hand, maybe magnesium really is what my body needs and going in for weekly infusions will be the trick to getting my life back. With every new treatment, I try to keep myself from getting overly excited about the possibilities, though the secret hope is always that this will be “the one.”

Though getting an appointment at my headache clinic involves waiting lists, phone tag, and sometimes months of waiting, treatments move quickly. I was in the ambulatory infusion clinic an hour later and Marian the nurse was wrapping her lucky tourniquet around my arm. She claimed to sacrifice a chicken every morning to make the luck hold, but perhaps the ritual went awry yesterday. The first attempt at putting in the IV didn’t work and, following descriptions of my vein rolling under the needle (ick!), she had to try a second time. Once it was in, all I had to do was lie back in the cushy recliner, pull up the heated blankets (I seriously wonder how much a blanket warmer would cost), and play Words With Friends for an hour.

At the start of the infusion, the pain was a level 5 and I was tired and nauseated. We’d left the house at 8:20 a.m. and I had awoken with a migraine. I had managed to eat a few crackers so I could take my morning meds, plus I’d taken an Amerge and a Zofran, both of which make me sleepy. At the end of the infusion, the pain was down to level 4, but I was even more tired and had added grumpy and hungry to the list of complaints. I wasn’t sure if the magnesium infusion had done anything and was too scared of the potential ramifications to think much about it.

My sweet husband drove me home so I could eat and nap. As I fell asleep, I imagined the magnesium coursing through my veins, spreading out into my cells and improving their function. The cells, wearing party hats and throwing confetti, were drunk on mineral fortification. I woke from the nap with my pain at a level 3, where it stayed until 9 p.m., at which point it dropped to a 2(!). Today, I’m back to a 3, even through another aura (and Amerge and nap).

Could magnesium be the white knight who sweeps me off my feet and makes my dreams come true? Are my expectations too high this early in the relationship? If I let myself fall head over heels, will I pay the price in heartbreak?

OK, Kerrie, take some deep, soothing breaths and let go of the “what ifs.” I’m going to enjoy this respite for what it is, however long it will last. On the agenda: Prepping for a barbecue and making ice cream with friends tomorrow, drafting a blog post on the business Hart and I are starting, exercising, showering, enjoying the delightful smell of orange blossoms, and whatever fun activities strike my fancy.

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Acceptance, My Best Treatment

This flowed out of Don’t Give Up on Finding a Treatment. It’s the most effective of all the headache treatments I’ve tried — and the hardest to get.

You may be surprised to learn I feel I’ve had success in treating my headaches. I still have pain, mental fogginess, a super sniffer and many other largely unknown symptoms of migraine. Yet I’m full of hope.

To me, hope isn’t about finding a magic bullet. It’s knowing that I can have a full and joyous life despite my illness. Something that I wrote when I first started blogging explains this idea well:

The Anatomy of Hope, by Dr. Jerome Groopman, draws a line between hope and positive thinking. Groopman, an oncologist and hematologist, has treated patients with life-threatening illness for 30 years, many of whom have survived against the odds. The definition of hope that he offers is that “Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.”

The better future he mentions does not require living without disease. Yes, people often overcome their diseases or are able to live without pain. But the better future Groopman describes can also be learning to live joyously even with debility.

Two years ago I didn’t understand the distinction. I am thankful for the time I spent in denial, but am even more grateful that my current version of being positive is rooted in reality. A reality that means I spend more days than I want in bed, but that I’m not emotionally miserable on those days.

I’m not saying that you just have to be positive and your headaches will go away. Nor do I think you can simply decide to accept your fate and go from there. Like all things in life, it’s a process. There’s no timeline to follow, but you will notice that you’ve began to have more acceptance than you once did.

If you want some help along the way, check out The Chronic Illness Workbook and Chronic Illness and the Twelve Steps. Therapists who specialize in chronic illness can also be tremendous help.

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Screaming Children

childrenSome days hearing a gaggle of children screaming is all it takes to cheer me up. About once a week, teachers at the local elementary school round up all their students for a trip to the park. As they walk past our house, they are always chattering happily. Never are they annoying, just endearing.

Although it rains a lot in Seattle, usually it’s barely a drizzle that never lasts long enough to get you wet. But there’s always an exception.

During today’s walk, it began to pour. Fifty kids yelled in shock and delight as they huddled under the trees to wait out the deluge. They waited and waited. Drenched, they turned back after about five minutes. And then they ran, talking loudly and laughing all the way.

I captured the tail end of the crew in this photo. (You can see the water pooling in the neighbor’s side yard — literally five minutes had passed since it started raining. Less than an hour later we’re enjoying blue skies and a gentle breeze.) These joyful children are definitely a visual (and auditory) representation of hope for me.